Wednesday, October 19, 2011

October 19, 2011 - Day 18

4 months, 2 weeks since diagnosis
day #27 of current hospital stay

I cracked today. I have stayed a rock through chemo and morphine, awful mouth sores and a transfer to the ICU. Today I fell apart over laundry. I suppose it was coming. You simply cannot put on a brave face forever. But there I was, storming around the hospital sobbing like a maniac. Ridiculous.

Riker still looked good when I woke up this morning. In fact, she's been doing great all day. She sat up and played for quite a while. She was strong and aware. We're weaning her off her high flow oxygen so that she can go back to 6 West and we've even reduced the amount of morphine she's getting. Even better, her ANC count is up to 140! That's 1/4 of the way to the magic 500 :) It should have been a good day. It should have been a great day.

The ICU is a rotten place to be. There is no bathroom on the floor and you cannot eat or have you phone on in the rooms. This means I am constantly having to leave the floor. The past two days, Riker has had a dedicated nurse who spent much of her time in the room. Today, her nurse had two patients. The other patient is much sicker and required lots of attention from the nurse. I suppose I should be thankful that Riker does not need that attention.

The nurses are so busy that they couldn't be bothered to listen to me when I told them what to do with my breast milk. My frozen milk ended up in their fridge and I was lucky to have discovered it before I lost 30 oz of milk.

At one point, I went into the hall to find a nurse and waiting over 10 minutes before I found someone. When I expressed how concerned I was, I was essentially told that if I had an emergency, I could run down the halls and yell for help. In intensive care? are you kidding me?
I was unable to get help when Riker would throw up on herself especially in regards to changing her bed. How am I supposed to do everything myself when my daughter has oxygen tubes coming from one side of the bed and dozens of tubes for all her medicines on the other side?

But today had to be laundry day. Laundry couldn't wait any longer. Most of Riker's toys and her lovey were all covered in dried mucus and blood. The washer on 6 is still broken so I had to go down to the regular laundry room. This laundry room has 2 washers and 2 dryers for 400 beds worth of patients and families to use. This laundry room is in the furthest possible corner of the 1st floor. It's a long walk and difficult to find.

Since Riker has no immune system, no one else can touch her laundry. This is why 6 has their own washer and dryer. Unfortunately, other people in this hospital don't understand and don't have the curtesy to leave other people's laundry alone. Other people are in this hospital because they are sick. Other people don't understand how important it is not to spread their germs around.

I couldn't get down to the laundry room when my load was done because I got held up in the room with Riker. When I told the nurse I had to get my laundry she asked me if I could be back within 10 minutes. AHHHH It takes 10 minutes just to walk to the laundry room. When I got there, of course, someone had taken my clothes out of the dryer and put them on top.

This is where I fell apart. I just completely lost it. I started sobbing and stomping around. I came all the way back upstairs and back to my room. The nurse asked me if I was ok and, in between sobs, I barked at her that I was fine. I found 3 dollars and headed out to re-wash our laundry. Now picture this - I am crying - really crying - and another nurse asks me to take my breast pumps out of the sink so that they can wash their hands in it. There are a million sinks in the halls and medicine rooms. She had to ask me now?? I had meant to take care of it... I had also meant to get my laundry before it sat in the dryer for 45 minutes! So back I went to was and take care of my pump parts.

All in all, it wasn't important. The day shouldn't have been so painful. I failed to enjoy the victories of the day. When I came back from getting the laundry, I finally got that smile from Riker that I've been waiting for. The whole day was lifted from me for a moment. Then, I told the nurse and her response was that she had been smiling at her the entire time i was downstairs getting my laundry. Did she really have to take that from me, too?

Of course, she didn't really take it from me. I'm not sure why I felt that way. Again, I should have just been happy about Riker. All I can think is that this has been brewing like a storm. I suppose it's easier to lose it over these things because you can reel it in after you reason with yourself. When you lose it over your baby having cancer, there is no reeling it back in... even when you calm down, she still has cancer. There is no reasoning yourself out of falling apart because all reason says you should be falling apart.

Hopefully, we'll be transferred out of the ICU tomorrow. They are weaning Riker off the high flow oxygen overnight and if she tolerates it they will be transferring us as soon as a bed becomes available. Now that I'm over my fit, I will focus on this. I will find it in myself to be grateful for my daughter's health. I will lie here awake listening to her breath and hoping it stays steady and deep.


  1. Tory you are BEYOND strong and deserve to lose it for a moment over whatever you want! I am crying just sitting here reading this because I just can't imagine being in your shoes. I am so glad that Riker is rebounding and doing well and hopefully you will be out of that horrible ICU in no time and back to "normal". Praying for you and Riker daily ((huge hugs))

  2. Tory

    You can pitch a fit all you want you have been going through this with Riker and it is OK to get mad! Her picture look great. Ya keep those counts going up.


  3. Hello Tory and Riker,

    Hug to both of you. Would it be possible to try 'washing' Riker's mouth with your breastmilk in an effort to help heal the sores in her mouth? We may not realize but when baby's breastfeed the milk rests in their mouth and perhaps helps keep the mouth clean and free of germs. I believe it's worth a try.

    Having a meltdown is quite appropriate based on what you are dealing with, and don't be afraid to let the nurses know what stressful this is for you... they could be providing care for the whole family. Hang in there.
    Her picture looks great!!!
    Still praying for you TONS and TONS!!!

  4. Hi Tory

    It's okay to lose it now and then. I know how sometimes the smallest things can set you off. You need to "vent" in order to continue being the biggest help to your daughter that you can. A wise person once said "Crying doesn't mean you're weak; it just means you've been strong for too long." Cancer moms are real heroes, just like any noteable women in history. You're doing just fine, and I'm glad you got to see Riker's smile.

    Dan Burdick, daddy to Tyler

  5. You're allowed to get pissy over seemingly trivial things! You're a person holding it together desperately and you can only do that for so long before something has to give. Besides, laundry sucks at the best of times but to have to spend money for the privilege of re washing because machines that *should* be accessible to you are still broken is enough to send the most unstressed person into annoyance.

  6. Tory hang in there! I think you're probably feeling a bit like it would be nice for someone to take care of you for a our hearts we are all wanting to take care of you Tory. Be easy on yourself. Love Rikers new pic she looks great!

  7. Tory,
    You are the glue that holds it all together and you are entitled to release it makes the bond stronger.
    Adam & Amy's Aunt Kathy